June 18, 2014

From NorVect: “There is a discrepancy in the medical community regarding which approach to take regarding diagnostics and treatment. This originates from the US where the two organizations IDSA and ILADS have two very differing views. IDSA (The Infectious Diseases Society of America) stipulates that it is an easy disease to diagnose and treat. The diagnostics rely mainly on a two-tiered testing regime (of Elisa and Western Blot). Treatment should not exceed 14- 28 days with antibiotics. After this maximum treatment of one month, IDSA states that the infection is treated, and what the patient experiences beyond this point, is a Post-Treatment Lyme Disease Syndrome (PTLDS), not related to an active infection.  ILADS (International Lyme and Associated Diseases Society) was founded by medical doctors (1999), who realized that the official treatment guidelines were not making the patients better. ILADS also puts a stronger emphasis on the clinical presentation, as the current diagnostics still are too uncertain. ILADS claims that an untreated infection of Bb may go chronic. Longer treatment regimens and a combination of several types of antibiotics is important to get well. ILADS arranges several times a year knowledge leading conferences to bring together respected international researchers and clinicians to share cutting-edge research and diagnostic and treatment modalities that will enhance the lives of those suffering from these diseases.  Increasingly more doctors now treat according to the ILADS guidelines. A total of 57% of American doctors follow the ILADS guidelines, and increasingly more states have passed doctor protection laws that let their physicians treat according to the ILADS guidelines. A recent example is the Vermont legislature that just passed Lyme bill H123, which acknowledges the severity of chronic Lyme disease, the role of co-infections in chronic illness, and the need for individualized treatment according to ILADS guidelines. The bill also contains language that protects health care practitioners from disciplinary action from the Vermont board of medical practice for diagnosing and treating tick-borne diseases according to ILADS guidelines, allowing practitioners to treat according to their best clinical judgement. This is a huge political step forward, and Vermont now joins a growing number of other states that have passed doctor protection laws.

This fundamental dispute has played out, not only in the universities, research communities or in the doctor’s office, it has also been taken to court as well as to the Senate and the Congress. Attorney General, Blumenthal waded into the Lyme disease controversy in 2006 when he launched an antitrust investigation into guidelines for treating Lyme developed by IDSA. The guidelines, which advised against long-term antibiotic therapy, had been used by insurers to restrict coverage for long-term treatment. Blumenthal alleged that some members of the panel that developed the guidelines had conflicts of interest, including financial stakes in drug companies or diagnostic tests. In April 2008, IDSA entered into an agreement with Connecticut Attorney General Richard Blumenthal to voluntarily undertake a special review of its 2006 Lyme disease guidelines. The outcome of the investigation was that 9 out of 14 of the IDSA authors had some kind of commercial stake (insurance, lyme vaccine etc.), however the guidelines were not revised. A study from 2011, also showed that 50% of random IDSA guidelines from 1994-2010 were based on low scientific quality and the authors warned that physicians should remain cautious when using current guidelines as the sole source guiding patient care decisionsDespite this fundamental disagreement, there is still a common understanding, that we still have a long way ahead when it comes to filling in the unknowns in biology and epidemiology of this disease. Whilst waiting for more research to be conducted, there are unfortunately a significant number of patients that suffer tremendously.”